[Congressional Record Volume 147, Number 7 (Monday, January 22, 2001)]
[Senate]
[Pages S425-S427]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                        PATIENTS' BILL OF RIGHTS

  Ms. STABENOW. Mr. President, it is a great honor and privilege for me 
to be standing before the Senate to speak for the first time since 
becoming a Senator from the State of Michigan. I also am very humbled 
to be only the 40th Senator from our great State to ever serve in this 
institution. I am very proud of that.
  I wish to speak about an important health care issue today and 
reference the fact that I have been involved in health care issues for 
over 20 years, starting, in fact, with my public service and 
involvement in politics, having been involved in an effort in my 
community, in Lansing, MI, to save a nursing home. We brought citizens 
together from all across the community, spoke out, and were able to 
keep that nursing home open that had been slated for closure. It was 
that beginning that got me

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involved in the important issues of health care that affect our 
families.
  As we begin the 107th Congress, I think we have a great opportunity 
to get things done for the people we represent. We have a 50/50 Senate, 
a divided House, and one of the closest elections we have seen in our 
history. Now is the time for us to reach across the aisle to colleagues 
on the other side, to work together on behalf of the families all of us 
represent.
  I come to the floor today to talk about one of the most important 
issues confronting us as a Congress and one of the best ways for us to 
start the new year providing health care for the families we represent 
and that is the enactment of a strong Patients' Bill of Rights. I 
strongly believe that every one of our citizens, child to senior, has 
the right to quality, affordable health care. Whether we are talking 
about access to nursing homes and home health care or lowering the cost 
of prescription drugs for seniors and our families or a Patients' Bill 
of Rights, I am pleased to have been involved in those efforts, and 
will continue to be so, with my colleagues here in the Senate. In fact, 
health care is one of the top priorities because this is what I have 
heard from the people I represent in Michigan.
  I would like to share a story with you, Mr. President, about the 
Luker family and their daughter, Jessica, of Royal Oak, MI. The Lukers' 
experience is a compelling example of the need for a strong Patients' 
Bill of Rights. I want to point to a replica of a picture of Jessica 
that I have with me here today.
  Jessica was born in 1975 with a rare metabolic disorder that required 
vigilant medical care. In the spring of 1999, Jessica's condition had 
worsened and she was having an average of 60 seizures a month. Her 
doctor recommended surgery to prevent further seizures, and on May 12, 
1999, she had this successful surgery. Her seizures were once again 
under control.
  Unfortunately, a week later, on May 17, Jessica's family received a 
letter saying her insurance had been changed retroactively. The 
insurance company refused to cover the surgery because the Lukers had 
not received preapproval.
  Jessica's mom, Tricia Luker, spent hours on the phone with the 
insurance company explaining the situation. They, in fact, did not find 
out about the change that had occurred May 1 until May 17. It was not 
possible for them to get preapproval for the surgery.
  After hours and hours on the phone, unfortunately, the Lukers were 
forced to pay for the surgery out of their own pocket. And they are 
still paying today in 2001.
  How could the Lukers know their insurance would change without 
receiving any advanced notice? How could the insurance company refuse 
to pay, using the bureaucracy to stand in the way of common sense?
  The insurance change meant more difficulties for the Lukers. 
Jessica's specialist, who had been treating her for 14 years, was not a 
part of the HMO and was not allowed to continue to serve her. Again, 
the Lukers were forced to deal with the insurance company, to try to 
find a new doctor, and Mr. And Mrs. Luker spent hours on the phone, 
page by page, name by name, going through, calling doctors, hearing: 
No, no, no, to serving and treating Jessica.
  Jessica's parents continued with her regular doctor and paid for the 
appointments out of their own pocket, while having insurance under an 
HMO.
  On September 10, 1999, Jessica passed away. In the final days of her 
life, Tricia Luker talks about the fact that she wanted to be on the 
front porch, blowing bubbles and reading books to Jessica, which she 
loved, but instead she was fighting the insurance company bureaucracy 
to get her the treatment from the doctor who had been with her for 14 
years.
  Today, Tricia Luker's daughter Jessica is gone, but they are still 
paying the bills from the insurance company that refused to cover the 
treatment that Jessica needed. Jessica's tragic story demonstrates why 
we need a strong Patients' Bill of Rights, a bill that will help 
patients like Jessica who have complicated medical problems with access 
to specialists.
  The bill would make insurance companies accountable for their 
decisions. It would afford the Lukers the opportunity to appeal what on 
its face seems unreasonable and lacking in common sense.
  Throughout my campaign for the Senate, I shared Jessica's story with 
the people of Michigan. I pledged to bring a picture with me to the 
Senate and to keep my promise to Jessica's family, and to all of the 
families of Michigan, to do everything I can to pass a Patients' Bill 
of Rights.
  Today I am taking my fight for Jessica to the Senate floor, and I 
hold great hope that this Congress, that this Senate, will do what 
others have failed to do--pass a strong Patients' Bill of Rights.
  A small version of this picture of Jessica sits on my desk in my 
Senate office. It will remain there with me until, in fact, we pass a 
Patients' Bill of Rights. No family should ever have to go through what 
Calvin and Tricia Luker went through, trying to get their daughter 
care. In the memory of Jessica, I call on my Senate colleagues to make 
passing a strong Patients' Bill of Rights one of our top priorities.
  I am very proud today to join with my colleagues, with our leader, 
Senator Daschle, to cosponsor the Patients' Bill of Rights and, in 
fact, this is the first bill that I am cosponsoring as a new United 
States Senator.
  The bill today is the same legislation commonly known as the Dingell-
Norwood bill that was passed overwhelmingly in a bipartisan way in the 
House of Representatives. I was proud to be a cosponsor in my service 
in the House of Representatives last session, and I am proud to be an 
original cosponsor of this bill in the 107th Congress.
  The legislation provides basic rights for patients to ensure access 
to care. Again, these are basic rights so that, regardless of your 
insurance, you know what the basic protections are for your family: 
Guaranteed access to emergency room care at the nearest facility; 
direct access for women to OB/GYN care; direct access to pediatricians; 
a guaranteed option for patients to select doctors outside of their 
plan, if necessary; coverage for clinical trials; access to medically 
necessary prescription drugs; and the right to an independent appeal 
for any denied claim.
  Most importantly, this legislation will hold insurance companies 
accountable for decisions they make regarding patient care, and this is 
the most critical point.
  I have spoken with families throughout Michigan and received 
countless letters, e-mails, and phone calls from people pleading with 
us to help them and to pass this bill. Jessica's is just one of the 
many tragic stories I have heard.
  I want to mention just a couple of other names of people with whom I 
have worked in the State of Michigan who have been struggling with 
their families to get the care they have paid for and they deserve. 
Ardath and Frank Reagan of Holly, MI. Mr. Reagan became paralyzed from 
the waist down from a rare disease. His insurance company refused to 
pay for his surgery, saying he was not a good candidate. They told 
Ardath to put her husband in a nursing home. The insurance company's 
foot dragging forced her husband to wait before starting treatment and 
severely aggravated the situation. Today, fortunately, Mr. Reagan is 
making a full recovery after intense work on his behalf by his family.
  Michael Pesendorfer from the Metro Detroit area--Michael's mother 
died of cancer. He has joined me on a number of occasions as well to 
speak out for a Patients' Bill of Rights. The insurance company delayed 
approval for treatment. They finally did get the approval for the 
procedure, but it was too late, and she died shortly after.
  Susan and Sam Yamen from Birmingham, MI--I read their story on the 
floor of the House of Representatives last year--are an example of why 
we need the commonsense policy of saying you go to the nearest 
emergency room in a medical emergency.
  Sam cut his leg with a chain saw from a business he operated. He had 
a severe leg injury and went to the nearest emergency room. The doctors 
were ready to operate to save his leg. They called the HMO, which said: 
Stop, you are in the wrong emergency room. They would not approve the 
surgery. The doctors said it was critical that it be done immediately 
to save the nerve endings in his leg. They would not approve the 
surgery in this emergency

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room and he, unfortunately, had to be placed into an ambulance and 
taken across town to another emergency room where he sat for 9 hours 
before he could get any care and did not receive the surgery he needed. 
In fact, Mr. Yamen has lost his tree trimming business and much of the 
nerve endings and feeling in his leg. His family has been in great 
economic struggle as a result of this.
  What these stories tell me is that patients enrolled in an HMO need 
basic protections and guarantees of adequate coverage. Our families are 
paying for the insurance. They need to get the care, and they need to 
know it is going to be there in an emergency.

  I believe a strong Patients' Bill of Rights provides those 
protections and guarantees for coverage. Certainly, Jessica and her 
family and the families I mentioned and all of the others I talked to 
all across Michigan have stories that need to be addressed because they 
are not just stories; they are reality for too many people.
  I am committed to reaching across the aisle to work with our 
colleagues to pass this critical health care legislation. I know that 
in order to keep my promise to Jessica's family, we have to get to work 
and we have to work together. I am ready to work with everyone who 
shares my goals and the goals and the needs of the families whom I 
represent. I look forward to working on the legislation that has been 
introduced today and the opportunity for us to show clearly that we 
intend to work together for the people of our country by passing a 
strong Patients' Bill of Rights as quickly as possible.
  Mr. President, I yield back the remainder of my time.
  The PRESIDING OFFICER. The Senator from Missouri.
  Mr. BOND. Mr. President, I ask unanimous consent that I be permitted 
to speak as in morning business for 6 minutes.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  Mr. BOND. Mr. President, first, on behalf of my colleagues, permit me 
to extend a warm welcome to our new Senator from Michigan. It was an 
honor to be on the floor as she made her first speech. I appreciate 
very much her dedication and enthusiasm and her expressed commitment 
and interest in working together. I assure her we will have many 
opportunities in the months to come. All of us are going to have to 
work together if we are going to make the kind of progress we wish.
  (The remarks of Mr. Bond pertaining to the introduction of S. 29 are 
located in today's Record under ``Statements on Introduced Bills and 
Joint Resolutions.'')

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